AIBU or are CAMHS really REALLY SHIT

[Anonquestion]

I feel like I have been trapped in some sort of nightmare with them. My daughter is now 14 yrs old and was first seen by them 3 years ago when her behaviour started to severely deterioarate with the move to secondary school. We first did brief solution focused therapy with her, 6 sessions over about 5 months due to staff being off sick, on AL etc. It made absolutely no difference, if anything it made herore anxious. This was followed by 'family therapy', which she hated; a lot of pressure was put on us to have it filmed for staff training which made things worse. This was with another 2 members of staff, one was an ex-pschiatric nurse the other had a degree in psychology. We were then told there was nothing more they could do but send us on a parenting course run by the early intervention service, this was absolutely shite, really obvious stuff like 'don't hit your children', 'try not to lose your temper', stuff which we already knew. Me and my husband feel very strongly that our daughter's got ASD and she is now being seen by someone else (another ex psychiatric nurse) who is trying to get her seen by a doctor for a diagnosis and also maybe looking at giving her some anti-anxiety medication. The whole time we have been treated so badly, the first two years as though her behaviour was due to really bad parenting - we're not perfect but I really don't think we are that bad. All of her behaviour suggests to me she has aspergers, I have worked with other teenage girls who have it who are so similar to mine; coped well up to adolescence but now really struggling, meltdowns, routines extremely important, can't change plans, v inflexible thinking, reeling off sentences which are direct quotes from books, lack of eye contact, obsessions with different hobbies then dropping them suddenly etc. I just feel if anyone actually spent some time with her and got to know her it would have been pretty clear. Instead we are treated like Munchausen's parents for even suggesting she may have ASD, treated like we are terrible parents. I'm at my wit's end now and don't know what to do. I can't believe how awful our experience with CAMHS has been. Am I being unreasonable?

www.daphnekeen.co.uk
My dd was diagnosed by daphne keen as the NHS pathway was very long, a year later she was dx by the Nhs confirming Asd.
Daphne works for st George's hospital so well respected. We took NHS reports and she contacted school beforehand.
It's costs £820 currently however we applied for dla before our dd's dx with Asd. You don't need a dx to apply for dla. We saved up that money whilst waiting for an app with DK.

I've had 2 DC involved with CAMHS - and never had a parenting course suggested to me!
However, even with a good CAHMS there is a limit to the things they can offer: various talking therapies (depends on how good the match between the therapist and patient are), anti-depressents (have side effects), a diagnosis, and umm not sure what else.
The thing is what do you think would help your DD? If you believe she has ASD, then I'd start from that point. Get the books, try the strategies, see if they help.

"I have been told countless times that a diagnosis won't help much, that DD will still have these issues if / when she is diagnosed."

Well, she will have the same issues of course, but having a diagnosis helps to make sense of those issues. To be honest, even if there isn't support available, having a diagnosis can still make a huge difference for parents, as they can confidently use the correct strategies and advocate for their child. It also makes a difference to the child as they can learn to accept themselves for who they are instead of beating themselves up about things.

Mummytime, yes there's a limit to how they can help, but denying existing issues and holding parents responsible when it's likely a child has autism is surely a very damaging way of going about their job of supporting children and adolescents with mental health problems.

To be honest, if we were responsible for our son's difficulties, we wouldn't have been so desperate to seek help for him in the first place. It was a shock to realise that despite being totally honest, our CAMHS therapist twisted information to fit their criteria and stuck doggedly to that even though it bore little relation to what we live with every day.
We are discharged now and would be very reluctant to ask for help again.
My oldest son is also autistic, although not officially diagnosed, and I have ASD, but these facts have been seen as more excuses for poor parenting (we are bloody amazing parents by the way ).

Anon - I went in recently and was very specific about what I wanted - a referral to a paediatrician for assessment. I went in February, he saw a paed last month who made a preliminary diagnosis and final DX is scheduled for September. So not that long.

If you want your DD assessed for ASD, say that. You could also group her issues under the triad of impairment headings (my DS has already had ASD ruled out).

The thing is CAMHS is not a national service, it really does vary from place to place. In some places they don't even diagnosis ASD, in others they are the only way to get diagnosis.
I was lucky one DD was spotted in her initial session as probably being on the spectrum, and the assessor was an Ed Psych who was willing to work to get her a diagnosis.

What diagnosis gave us is: something to use to push for accommodations at school,
something which means that schools know she isn't "just naughty" but has a recognised issue,
and a label to know which books to read etc.

My other DD has had ASD dismissed, but I'm still not sure that was totally accurate. However she has received help for her major needs. (And part of the reason it was dismissed was because she didn't feel that a diagnosis was a reflection of her issues - but at other times she thinks it might be, she is a "subtle" case whatever.)

I know I have been "lucky" in so far on the whole meeting the right people at the right time.

Our CAMHS doesn't diagnose, that falls to the CDC, but a child will still see a multidisciplinary team whether they go through CAMHS or CDC, there shouldn't be a difference in terms of accessing assessment, but there is, because CAMHS seem to put a greater emphasis on gatekeeping and blaming parents than correctly identifying autistic children.
However they should still be supporting children who need it, and unless the children fit their narrow criteria in terms of how they present and you happen to live in the right place, they're not doing that.
It should be a national service. The level of support a child can receive in one area should be the same as any other area CAMHS represent.

It should be a national service. The level of support a child can receive in one area should be the same as any other area CAMHS represent.

However - the government has placed CAMHS along with other services under the control of primary Care Commissioning groups. This means that what CAMHS can do or is required to do depends partly on the PCC. I'm "lucky" my PCC seems to take mental health seriously, so they have put more money in, so for example CAMHS is offering "twilight" sessions to cope with demand.

If in an area the PCC starves CAMHS of money then they do have to act as "gate keepers". The more caring staff may well be disillusioned and leave (or just give up). Disasters may happen, and this causes everyone to focus on blame shifting rather than helping.

Of course the government got ride of the children's mental health Tsar...

YANBU. My DD is now 19, but.a few.years ago I could have written large parts of your post myself.

My impression at the time was that, apart from. being under resourced and overstretched, they were also used to dealing with kids whose problems were caused by poor parenting or lack of communication, so that's what they expected to see, and also what resources they had were geared towards that. So it was parenting courses, family therapy, or a prescription for fluoxetine (which made AS and BP DD manic and psychotic. In response she was taken off it and discharged.)

As for a diagnosis , without one there is no SEN statement and no reasonable adjustments. Of course it's bloody beneficial ! Do not expect it to magically change your lives though, because once you have it all further issues can be blamed on it and no further help given.

The best help you can give her is to become as knowledgeable about AS, anxiety and whatever else yourself.

Oh, and do get checked that there aren't any u.underlying defficiencies - DD was deficient in vitamin D abd B12, supplements for former and regular shots for latee (not found or addressed until she was 18 abd shot if CAHMS) have helped hugely.

I'm not sure when CAMHS were placed under the control of the PCC, but ours has had a bad reputation for years.

I'm sure there has to be an element of gatekeeping, but where we are, they go to ridiculous lengths to blame parents and withhold support, and this has been admitted by our GP and ds's paed, who felt they had no option to refer Ds, but at the same time were very reluctant to do so.

Our area is starved of money, yet at the same time that doesn't stop them referring parents of autistic children onto parenting courses that have no hope whatsoever of helping, then blaming the parents and discharging them when those courses don't help.
They also have no qualms about recommending months of family therapy (each hour long session involving four therapists/psychiatric nurses, which must cost more in total than a full assessment would, or even if they were honest with us at the start, and said at the first appointment something along the lines of "we can't help you in this instance, because abc, but if you feel your child is in immediate danger here's who you contact" rather than stringing families along, blaming them, then discharging them. By the time they see the child again, lack of professional input is likely to mean that their issues will cost more to unpick and deal with than if they'd acknowledged them in the first place.

I do understand they are in a difficult position as an organisation, but they must accept some responsibility for the poor care that so many children and families receive.

My daughter is 7, but was seen by CAMHS; she had a lovely key person, but she then left and we wasn't given another one... We have been waiting 5 months for art therapy, which I can understand, but her anxiety is getting worse, but they have said there is nothing they can do... I don't know if they are necessarily bad, I just think they have so many children to deal with

The govt claiming they are concerned about teen's MH is a joke!

CAMHS funding has been cut to the bone.

I don't think it's CAMHS per se (although they are very different in different areas of the country) but I think it's the underfunding of CAMHS, and all other mental health services that is the issue. Not just this Gvmnt, but over decades.

After years of trying to get help for dd, who is 16, we went to A&E on Saturday. We were admitted and I had to stay with her on a children's ward.

We weren't seen by anyone until Monday. The CAMHS liaison officer was cold and obstructive.

We were still there on Thursday! dd was denied an inpatient admission at a specialist hospital. It was decided that it's not a MH issue "just her autism".

She can't live at home at the moment. The recommendation was a "children's home"!

Thornrose im so sorry, that's shit

"she is now being seen by someone else (another ex psychiatric nurse) who is trying to get her seen by a doctor..."

What role does this person have? Are you sure she is seeing 'ex nurses' and not psychiatric / mental health nurses who just have a different title than you'd expect?

You are so right. My DS was under CAMHS for just over 3 years with severe depression and anxiety.
They were awful. I just wish I had realised sooner because they have wasted a lot of his childhood and made all of our family suffer.
The Dr had him on many different meds - which we later found out he didn't really need so is now weaning himself off them.
We now pay privately and it is so expensive but I know some therapist offer reduced rates for those who cant pay the full rate. I wish we had done this years ago but we put so much faith in camhs and didn't want to question them.
They used excuse after excuse just to make their job easier. The Dr always seemed away with the fairies and the family therapist caused huge divides in our family!!
I resent them so much.
3 years and they did nothing but make everything worse.

There is serious underfunding and lack.of staff in my area but I do think if they're that shit, just pay privately for some support. Not saying that's cheap but if CAMHS don't help then why bother persevering.

I feel for you OP.

My dd was seen by CAMHS for 3 years on and off, mostly for family therapy and CBT. Her diagnosis was depression and anxiety and DH and I were made to feel as though our parenting and our family dynamic was the problem.

After three years of her screaming at us every day, school refusing, holding the whole family to ransom, kicking holes in doors, threatening, hitting and bullying me and her siblings, we were finally referred to the Michael Rutter Centre at the Maudsley, but only after dd took an overdose, and only after I'd got the NSPCC and Social Services involved (I felt she was at risk of exploitation outside the home). She has now got a diagnosis of conduct disorder, personality disorder, PTSD and treatment resistant depression and anxiety. I'm hoping that now she will receive te treatment she needs.

CAMHS shoehorns you into the provision they are able to offer, regardless of whether it is a proper fit for your child or not.

Prior to all this we got a diagnosis of autism for our DS over the phone from a senior practitioner at CAMHS. That was before they'd actually seen or assessed him. It was in response to me going to my MP and making a formal complaint about my son sitting on the waiting list for a year. The practitioner said 'why do you want a diagnosis'? Then said 'well, I'm going to say that you can tell the staff at his school that he has a working diagnosis of aspergers'. She was happy to give me this diagnosis on the basis that 1. The EP at school had seen ds and said that she suspected he was on the spectrum and 2. I thought he was on the spectrum and 3. My sister, who was a SENCO at the time, thought he was on the spectrum. No need for a proper assessment!

YDNBU! Bane of my bloody life. I think its a postcode lottery thing and depends where you are as to whether you get good help from CAMHS.
Hope the SNs board can help.

Not everyone is in a position to go private though.
It's not ok that DC of less wealthy parents have to put up with inefficient shit, or do without any support.

Thornrose I'm so sorry for you and your family.

We also had a terrible CAMHS worker visit dd in hospital after her overdose, who didn't listen to dd, was glib and sloppy, and who, after promising to phone dd and me the next day to report on the progress of dd's post-discharge plan, just didn't phone either of us for three days. Then lied and said that she had, but that she'd not been able to get through. I asked for her to be removed from DD's case. I have NEVER done anything like that before - I'm usually very grateful to the staff and tolerant of their inconsistencies because I know how much pressure they are under. But you don't promise a suicidal 16 year old girl you will call her and let her know what's happening with her care, and then not bother to call. And then lie. :-(

Thornrose, that's what we had, for years. Eating disorder ? Well, what do you expect, she has AS, they are fussy eaters. Self harm ? Well, what do you expect, she has... Attempted.suicide ? Well... Have you ever thought to tell her you still accept her even though she has AS ?

Jesus wept...

minifingerz, when attempted suicide for the first time, she had been on the CAHMCAHMSaiting list for 6 months. When seen by the CAHMS duty person next morning, she was discharged into my care because "I knew what was doing" (I must admit, that was news to me, but I suppose, in comparison...) and told she'd be getting an emergency appointment with CAHMS so they could start helping her.

Six bloody weeks it took. Six weeks with a teen determined to put an end to herself. I slept on the floor outside her bedroom so I could jump into action at any unusual noise. She still managed three more attempts - took apart a pencil sharpener, smashed a mirror, smashed a glass. Eventually I managed to remove everything dangerous, but what a learning curve that was...

Anyway, sorry about the rant. Point is, we still survived, and eventually she got better, we figured it out together and started getting some actual help when she turned 18.

So don't lose hope. It can be done !

Thornrose
My DD Is in a Children's home due to the shittness of cahms and ss.
I m terrified for her but was also terrified of her.
It's all such a bloody nightmare mess, I hate these people.